Has anyone out there suffered spinal cord injury from spinal instrumentation after a car accident? I was in a car accident in June 2005 and prior to this had had 3 major spine surgeries with instrumentations from T5-Sacrum. The top of one of the rods were shoved into my spinal cord causing a spinal cord compression. The doctors did not perform surgery on me until Nov 2005, which required removal of most of my instrumentation, except for the 8 titanium cages. As a result, permanent injury to my bowel, bladder, lower torso into my legs with some different areas of no feeling and am experiencing ongoing problems of which I don't know what is happening. If i had to have waited any longer, I would have been paralyzed. Is anyone out there familiar with these types of injuries?
(14 hr) 3-stage spine surgery on me while I was coming down with chicken pox which resulted in varicella zoster encephalitis, which resulted in brain damage, seizures, etc. I was not told about this after the surgery and not treated during, so I did not find out what was going on with me until many doctors and treatments later. Because of the prior encephalitis, I was unable to have the necessary mylegram I needed to find out the extent of my damages because I was told since the only area that the mylegram could be performed was the cervical spine, I was told that this could reactivate the encephalitis. I need someone that has some knowledge of this, as there is noone again, that will help me and because of what my previous doctor had done to me. To all those out there that think that spine surgery is the way to go to take away your pain, you are highly mistaken. One surgery leads into several more and after awhile NOONE will treat you. You are too complicated of a case and a risk for them, much less will the surgeon that created the problems to begin with, since you are not their *success story*. Forget about even going to the emergency room for help, as they don't have experience with all these problems and send you home. I am now told that I need to move near a university hospital for the remainder of my life because I will be going through this for the rest of my life. I am now 41. This all started at 15 yrs old from a *curvature of the spine* that I was told that if I didn't have a surgery I would be in pain for the rest of my life and crippled over. Let me tell you, I would MUCH rather be dealing with just some pain and scoliosis versus what I've gone through and millions of others like me. (Unfortunately for me I cannot take medications to relieve pain as I HAVE to work and drive since I am a single mom. Forget about getting disability cause I have to work or my kids and I would be living in a cardboard box) Doctors will NOT tell you about OUR stories, only the *good* ones. This my friends is only a PORTION of what my permanent problems are, and ALL from the surgeries. Also, beware if you have spinal instrumentation (especially several levels) and are involved in a car accident or rear-end collision. You might not think anything has happened, and Xrays don't always show, but it don't take much to move this hardware around, nor break for that matter, as that has happened to me before as well. If you have any questions, please feel free to ask. This isn't a pleasant story, but it IS a reality.

Hi. I am only fused at one level "to date", but there are a few others on here that are fused at around the same amount of levels as yourself.

I can certainly see why you have such distain of surgery with what you have been through. When exactly did they discover you had chicken pox. And you didnt know you had them or the fact you developed enceph and werent informed of that? I didnt quite get the full gist of the facts there.

A really top notch university hospital may not be a bad idea to looking for a team of docs to see what more can be done for you. As to telling you to move near one.. I don't know that you need to do that, nor the crack being appropriate for the doc to have made to you in the first place.

Why are all medications not considered for you? There are medications that are out there today that can help ease some of your suffering and not mess with your head at all or very little. I am in the legal field and I have to have a sharp mind, as I deal with people's lives and I can not miss anything. I learned that I had to try different meds to achieve a certain level of pain relief but keep my mind clear so I could continue to work and drive. I am not in lala land at all, and my pain level is manageable.

For me, surgery was like winning the lottery to me. I tried everything possible non-invasive and at almost 4 years of hell, nothing worked. It ended up that a disc that looked good on all mri's was just an empty shell holding up the fort, and the doctor was stunned it hadn't collapsed. So I was faced with collapse at that level. Surgery was eminent and welcomed by me to stablize my spine nad for the possibilty of getting some relief. It worked.. I got 85% improvement. I know I will face more back issues in the future as I apparently don't have a healthy spine, but I equate it to someone having bad knees and such. I will face whatever comes and do what I have to, including more surgery I have to. But i will avoid it if possible like I did the first time round.

I wish I knew of a a great group in your area, but I dont.

I commend your spirit and endurance with what you've been and are currently going through. You are clearly a fighter and your drive and determination to take care of yourself and child is very respected.

Welcome to the board. This is a great place to air how you are feeling, bounce ideas off of others that completely understand you, and just chat with everyday people that "know" how you feel. We all support and learn with each other on here.

I am interested in hearing more about you and hopefully someone on here will be able to give you some ideas on some surgeons to contact.

__________________
"believe in the beauty of your dreams"- E. Roosevelt

L5/S1 bulging @ 18, now 46; still there (but no pain)
Fusion at L4/L5 Apr -2006
Solidly Fused Nov-2006
A Success, but still improving!

Wow, you've been through so much! It's understandable why you're angry about your situation. There are good doctors out there, though, who may be able to help you. Don't give up!

I have a T4 to Sacrum fusion. I started developing scoliosis at age 14. At age 15 I was in quite a bit of pain and asked my parents to take me to a doctor. They said no. So I wasn't diagnosed or treated until age 18. By that time, I was having constant pain that was sometimes excrutiating, and I had progressed to about a 75 degree curve. Since I was finished growing, there was not much correction that could be done. They corrrected just slightly and fused me from T4 to L4.

In my early 40's, I developed osteoporosis, in spite of having taken calcium supplements and drinking milk with every meal for years. The osteoporosis, along with the strong sidewards pull from my uncorrected scoliosis, broke down my lower spine. My pain, after being tolerable for so many years since the first fusion, was through the roof. I couldn't walk a block without a cane, and my normal actiivities were quickly becoming impossible. I pursued an orthopedic surgeon, who did a CT and bone scan, had me do PT, and then didn't know what else to do with me. He referred me on to another orthopedic surgeon who, I'm happy to say, didn't give up on me like the first one did. I ended up having a second fusion, this time going back up to T10 and all the way down to the sacrum. My new doctor came up with a surgical plan for me and said to let him know when I was ready. I just looked at him and said, "I'm ready!" That's when he said he thought I was doing the best thing, as he would expect me to be in a wheelchair within 10 years otherwise. From the amount of pain I was in, I doubt that it would have taken 10 years. I still have pain everyday, but it's a different pain and is more or less controllable with pain meds. I'll take this over the other pain any day! For me, fusion was the right decision.

All this is to say that even though you've had serious complications, the original doctor was probably right about the severe pain you would have had without the fusion. Unfortunately, it didn't work out so well for you, and my heart goes out to you. I had my rods removed after the first fusion, as my doctor felt that if I were ever in an accident, having metal in my back could be a problem. That's a catch-22. Your case proves his point, but my doctors now have said that I would have been better off if he had left those rods there. I wouldn't have had such a break down in the remaining vertebrae if the rods had stayed in. We have to make the best decisions we can, along with our doctors, and without being able to see the future, sometimes it's difficult to know the best route.

I think you would be wise to look into a good university hospital. Do you have family support? Is there someone who could take your kids for a few days if you found a good ortho group at a univeristy hospital and needed to travel to see them? Are you in an occupation that would let you relocate if you find doctors who can help you? I know that's a major life change, but it might be worth it to get some help. There are people here who travel up to 4 hours to get to the doctor they found who can help them. Maybe you can map out a radius around your home marking how far it would be reasonable to travel without relocating and then look into whether there are any major medical centers within that radius.

Michele, I'm so sorry for what you're going through. I hope you won't give up and will be able to find doctors who will be committed to helping you. There are some really wonderful doctors out there.

I feel for you more than words can say.
I had 2 spinal (lumbar multi-levels) fusions with instrumentations and more. My first one was in 2006, the second 7 weeks ago. I don't want to go into depressing details, I don't want to discourage others, but it's not easy.
I also question myself what would happen if I wouldn't do surgery? I was told I will end up in a wheel chair and by doing surgery my sucess rate is 95%.
Never happened. I used to be a very fit, never overweight, heavy duty excercising person - and now I am with a walker, cane and a lot of pain.

I know a lot of people maybe with a less complicated surgeries doing well enough to go on with their lives. I guess it's all depends on a surgery and damages.

Emily and all who have posted, thank you for your kind words and hope you're all doing well. Sorry if I come across as bitter or talk too much.

I'm sure there are good doctors out there, but however, for me, there are no more doctors here that I can go to. I also do not have any use for Scoliosis/Spine surgeons.

As for traveling, I spent decades traveling the 3 hrs each way for my surgeries, office visits, testing, etc. I now am traveling 4 hrs each way. After one of my botched up surgeries, I had decided to find another doctor. That search went on for over 5 yrs and left me going back to the same doctor that messed me up after the second surgery, since noone else would take on what he had done to me. A neurosurgeon that knew him and how he practiced was appauled when he saw what he had done to me and told me that it would be hard to find someone. I went back to him out of desperation, as I had shrunk down from 5'9 to 5'2 by then and could no longer walk. The third surgery that I had (14 hrs) was given to me after him KNOWING I was probably coming down with chicken pox, as one of my daughters came down with chicken pox 2 wks prior and my other daughter one day before surgery. The dr and the RN both said not to worry. That is how I came down with encephalitis and major complications while in that surgery, but I was not told because everyone refused to treat me after the surgery, so nothing was ever followed up. I found out after several tests later because I was having seizures and falling over, blacking out, and couldn't see. To find a doctor that has knowledge of this is almost impossible. Usually people that get varicella zoster encephalitis are those with weakened immune systems or AIDS. Those I do not have of course. Mine was from having a major surgery while coming down with chicken pox and a high fever. To make matters worse, the car accident only added to my problems of course. After my car accident, I needed him to check out my hardware and spine to see if everything was ok, as he was the only one that knew my back. He refused to see me, saying he *didn't do car accidents*. I was supposed to be his patient regardless, as I had no one else.

I can also relate to the osteoporosis, as I was diagnosed at 31. This was also due to the surgeries, not from lack of exercise or being overweight, etc. Prior to my 3rd surgery (anterior/posterior/anterior) I used to do over 100 set ups a day, walking 12 miles a day, work, etc. to stay in shape, with my fusion from T-5 - sacrum and hardware. Restrictive lung disease and obstructive lung disease are also problems from the surgeries. (no I do not smoke and never did)

Emily, your doctor did the right thing by removing your rods later. They serve no purpose after a year. My doctor refused to take mine out each time. He told me they could never break. My first set did break after awhile. They also created a lumbar flat back syndrome, kyphosis and other deformities. My spine continued to twist and go over forward. My second set did the same thing (that surgery was never done right)...and of course my third set and my having the car accident. I'm not so sure your spine would have done any better by leaving them in. Everyone I know has problems because they were left in and I am one of those. One of my friend's hardware is actually cracking her fusions and not to mention the rest of the problems she has. Noone will touch her now either because they don't want to take on the liability and like me, her old surgeon will not touch her either. It is also now too dangerous to have them removed. These are foreign objects left in our bodies that shouldn't be there in the first place. The metals also break down your body's immune system as well over the years. I was allergic to my second set and could not go out in the sun.

One thing I have noticed now that I don't have the rods and pedicle screws, is that I can actually step off from a step or a dip in the ground without it feeling like my vertibrae are banging up against each other. I used to think it was the cages that were the cause of this, but now I know that wasn't true as I still have the cages and do not have that same feeling. Has anyone else experienced this? Also, anyone out there that had rib removal from these surgeries, do you still have pain in that area to the touch?

Sorry all, if I sound so bitter, as I am after 27 yrs of this and will be for the rest of my life while he continues to be a multi millionaire. I am bitter that this guy took away my life and others, and to the medical community that protects jerks like this. I hope you are doing well, allieb. Thank you all for listening and understanding. All the best!

You do sound bitter, but it's certainly understandable. Most of us here, at least the regulars, are here because of lingering back problems. We know what it's like, we hear your pain, and we feel for you.

I do know, though, quite a few people who went through the scoliosis surgery at the appropriate time and have never had another problem with their backs. One of my classmates back in junior high school went through it and for a whole year came to school for half days when she could tolerate it, in her body cast with someone else carrying her books for her all the time. She would have to kneel on the floor in front of her desk half the time because the chair was so hard to sit in with the body cast. In our senior year, she made the honor guard squad. Her back was perfect, absolutely straight, and she could toss that rifle through the air like it was nothing. I guess a lot depends on early intervention and finding the right doctor. I have to say, it saddens me to see these people who have never had another problem. Not that I'm sad that they're so well-off, or that I'm jealous of them. I'm not. I'm truly happy for them that it worked out so well. What makes me sad is that I could have had that kind of perfect correction, too, but instead I've had continuous pain and complications. It makes me so sad that my parents didn't care enough about me to let me see a doctor when I asked. If it had been my sister, the favored child, she would have been at the doctor's office that same day! I guess I sound a little bitter, too.

I'm so sorry, Michele, that it seems like the doors have closed for you. I don't know what else to suggest, except maybe to go to one of the nationally known places, like Johns Hopkins. Maybe they'd take you on as a challenge and a good teaching case.

Emily,
I'm sorry to hear that your parents made you wait at the time. We will never know what would have happened if they would have acted sooner, if it would have helped or not. I wish my parents actually HAD waited in my case. My father was quick to have this doctor tell them I needed surgery and he rushed it along without getting another opinion because his secondary insurance would be running out by the end of the year (not because he was worried about me) so I had my first surgery at 15 yrs old in Dec of that year. I, too, wore the body brace that was riveted on for almost a year to school everyday, carrying my books and living in hot south Florida in 90+ degree weather was not fun. Not to mention I was 5'9" and only weighed 80 lbs. By the time I got out of the hospital, I was down to 70 some pds and almost didn't get to come home. After 2 wks they let me go home. I looked like death warmed over. My father then wanted me to get a job as soon as I came home from the hospital. I was made fun of in school and literally pushed down on the concrete from the other kids in high school. I wouldn't have wished this on anyone. I know people in school that never had surgery with scoliosis and wore the ugly brace for several years and did fine too, and some that never did a thing period as well. It all depends on the person.

It's one thing when a surgery just doesn't work, but for someone to do surgeries for no reason and mess you up from negligence is another story. That is why I feel others should know, because I don't want this happening to someone else at his hands.

I understand where you are coming from and being angry/upset because of all this. It's so not fun when we've had to deal with this basically most of our lives, missing out on what others take for granted. I get angry myself because this doctor put me in this position and I can't even take care of my health because it's so costly (not to mention finding one that can/will help you) and I shouldn't have to be paying for ANY of this now because it was HIS fault. Being a single mom is hard enough (we divorced because of all this), but to deal with all this alone, it makes you feel like giving up, and I came close several times. I see others that are on disability for the smallest things and I can't even do so because I can't just quit or we would be on the streets. I used to be on permanent disability, but less than $500.00 a mth was not going to take care of my kids so like a dummy, went back to school and got a degree. Now I'm divorced, no child support and trying to pay for a degree I can't pay back. I never dreamed I would have gotten in a car accident with all this. I guess luck was not in the cards for me. I also get angry because after the car accident and I had my surgery because of the spinal cord injury along with a hernia operation the same day. I was supposed to be out of work for 8 wks, but because I am a single mom and only one income, I had to go back after 2 wks. It's scary when you're alone and you don't have money coming in and the bills still have to be paid, but that's another story. I guess I just needed to vent, as I don't have anyone to talk to. I'm sorry if I upset you or anyone else. I hope you understand. I do wish all the best for you.

You didn't upset me. I just feel so bad for you. You're in a terrible position. No child support or anything?! Shame on him!

You can always come on here and vent. We do understand your pain, and many of us are in similar financial straits -- maybe not as difficult as your situation, but we probably understand better than anyone else.

I don't know what to tell you except to take it a day at a time and to hang in there for your kids. You can take pride in your own strength to be able to carry on in such trying circumstances.